Does anyone run?

[MarybellM]

I’ve been doing the Couch to 5k programme, building myself up to be a (slow...) runner. I’m feeling the benefits - mental as well as physical, and would love my husband to try it too. I’ve been encouraging him but his PV symptoms include aching muscles and fatigue. Could running help or make it worse? Any advice gratefully appreciated.

[WileyFrench]

I have ET and take HU, and do all kinds of exercise - running, hiking, racquet sports etc. I don’t have the fatigue a lot of people talk about but I know that exercise certainly doesn’t bring on any symptoms, and there are definite benefits of endorphins (the feel-good hormones) from exercise.

[MarybellM in reply to WileyFrench]

Thanks Wiley. Really appreciate that encouragement!

[WileyFrench in reply to MarybellM]

Oh and by the way - that couch-to-5K program is very very good. Totally works if you stick with it.

[ELIZBEN]

Hi

I have ET and i also took up the couch to 5k last year. I took it easy and jogged slowly. I did it right after work even though i was feeling fatigued and sometimes i would just have to come straight home afterwards have a very quick bite to eat then go straight to bed. Im repeating it again right now but increasing my pace and feeling better after doing it.

Keep us up to date with how you both get on

J x

[MarybellM in reply to ELIZBEN]

Thank you so much for the reply. Sounds like you’re doing really well and have strong will power and determination! Well done! I’ve found it hard to get motivated, even without an MPN. I’m discussing all the responses with hubby so it’s very helpful to hear different experiences. In general he’d like to be fitter - he used to play football and then golf, and he’s not done much of either since being diagnosed. Just looking for something he can do to build up his stamina and fitness gradually. At the moment if he goes for a round of golf he’s sore and tired for days. Thanks again. X

[ELIZBEN in reply to MarybellM]

Its not easy and i have total sympathy with your husband. The fatigue has such an impact on my life.

Take care

J x

[Jeftheref]

PV for two years. I did my 75 park run (5k) yesterday in 21 deg c sunshine. Hard going but very satisfying at the finish. Is there a local park run near you. We regularly have 400 to 500 runners each week here in Basingstoke. You don’t have to run, you can walk if you like. I’m sure your hubby would enjoy it.

[MarybellM in reply to Jeftheref]

That’s great, Jef! Thank you for sharing your experience, which is very positive and encouraging.

[Welbi]

I have been running for the last 5 years (have ET diagnosed 8 years ago) since I am running I feel so much better..mentally and physically.I run 5km at lest 5 times a week and go to the gym few times...occasionally I will have aches in my mussels and bones but nothing major...definitely will recommend exercising..if not running walking is great to ..hope your husband will listen to you and feel better xx

[MarybellM in reply to Welbi]

Thanks Welbi. Interesting that you started running since the diagnosis. I’m really grateful to you for taking the trouble to share that, and for your good wishes too. Xx

[Trueblue8]

I have been a runner all my life. I was diagnosed with ET a few months ago and take 1000mg Hydroxycarbamide daily, but I still do the same exercise regime, which for me is vitally important. I do feel fatigued but only when I stop doing anything. I generally have a little snooze at lunchtime, which helps! My wife did the couch to 5k several months ago and she's now running regularly and doing anything up to 10k. It might be an idea to both enter a local 5k run, then your husband would have the incentive to train. If you have a local park run that would be ideal. Good luck!

[MarybellM in reply to Trueblue8]

Wow! That’s such a great story - I really hope we can do something similar. Thank you for your response; very inspiring!

[william-Indo]

Hi Mary,

I am doing walking every day and get the benefit.

For aching, just get the hot shower.

Hopeful it work for ypur husband

[MarybellM in reply to william-Indo]

Thank you for your reply. Maybe walking will be best for him. We’re trying to walk together most days but I just wondered if running could build up his stamina a bit more. All the best to you.

[Ann16]

Hi MarybellM,

I used to run anywhere from a 5k to a half marathon but was having a lot of problems then found out I have PV with Jak2+. I walk now but some days that does me in. I have had a bad week from overdoing myself, lots of fatigue and bone pain. Anyone with PV would just have to experiment and see how they are affected with exercise. Hope it works out great for you and your husband. Ann

[MarybellM in reply to Ann16]

Thanks Ann. What a shame that you have this PV fatigue like my husband has. He goes to bed for a couple of hours every afternoon. He’s 59 and self-employed working from home, so he can work around the fatigue. I wondered if exercise could somehow help the fatigue (you do hear that this can happen) but maybe not with PV. As you say, the best thing will be to experiment and see what works. I suppose my fear is that running would make his PV worse or his fatigue worse. Thank you again, for sharing your experience. It all adds to the mix and will help us decide what to do. M

[Spillikins]

I have ET (with JAK2) and find that running/exercise/staying active really helps my symptoms. If I don't get up and move around a bit everyday I find the fatigue much worse. That said- sometimes it is hard to drag myself off the couch!

[MarybellM in reply to Spillikins]

Thank you Spillikins - that’s really helpful. Think I’m going to keep encouraging (without nagging, which would just be annoying...!) the exercise. Probably start with more walking together and then let him see the positive effects of the running on myself and let him decide. Appreciate your reply!

[Cja1956]

I am 63 now. I was diagnosed with ET 11 years ago which progressed to PV about 3 years ago. I find I feel the worst in the mornings but as the day goes on, I usually start to feel better. I work from home, too. On a day that I don’t get out at all. when my partner gets home from work, he encourages me to go for a walk with him. Afterwards, I feel so much better. I agree that pushing yourself to get into some kind of routine, even if it’s just walking, is helpful.

[MarybellM in reply to Cja1956]

That’s so lovely - I want to be that encouraging partner too! The more I think of it (and having read all the posts on this brilliantly supportive forum) the more I think that walking might be the best option rather than running. I always love walking with him and we can talk over the day together. He aims for 7500 steps at the moment so I’ll suggest increasing it to 1000. Thank you for your response -it means a lot to get this support from people who know what it’s really like to live with these conditions. Hearing from the many people who get the best out of life is very encouraging. All the best to you and your partner. X

[Cja1956 in reply to MarybellM]

Thank you, Marybell. Same to you. Sounds like you are already a very supportive partner. He’s very lucky to have you.

[BloodZero]

I have Et and have ran on and off over the years. And in my case running is a benifit as long as its not overdone. Heart gets stronger, can pump blood more effectively, carries oxygen better. Improves fatigue and mood.

But i dont over do it. I go at my own pace. I no longer follow online plans, they are too generic and dont fit the ups and downs of my life and enegry. I make my own plans and adjust it as i go along.

[MarybellM in reply to BloodZero]

Great advice and great idea! Thank you. Thank

[ranzoray]

Had PV for 7 years now , tried running but it didn't agree with me so took up cycling about 5 years ago . It's really made a difference to my fitness and energy levels . Perhaps your husband could cycle along as you run . . . . just a thought . As a lot of people have said , you just have to experiment and find out what works for your situation .

[MarybellM in reply to ranzoray]

Another insomniac? Thought I was the only one...😂 Do you know what... I LOVE the idea of a bike!! In fact I might get one too. Watch this space. 🚲🚲Thank you for the brilliant idea!

[SilverET]

I have ET and have always been a runner. I find it gives me more energy once I am fit and when I am forced to stop running for any length of time I notice that I don't feel as good. My doctors always told me to listen to my body but that keeping fit was always going to eb beneficial. Good luck with it. It can become quite addictive over time.

Cheers, SilverET

[MarybellM in reply to SilverET]

Thank you - it’s reassuring that the medics all say to keep exercising. Glad it’s working well for you. Thanks for your nice message.